Lyme Disease: My Journey So Far by Craig Fordham

I’m seldom happier then when I’m in the great outdoors, especially the woods and in the forest and I’ve been lucky enough to have spent the vast amount of my working life learning and teaching in this environment. Now, this does come with a few issues for me. Firstly, I’m very fair-skinned so I burn easily in the sunshine and secondly, every insect about seems to like the taste of me. Friends and colleagues over the years have benefitted from having me around in the woods as the midges and mozzies will leave them alone to feast on me!

Of course, I’ve tried to protect myself with various repellents and have even dabbled with a few old wives’ tales as well, in terms of remedies, but I have come to accept that every year I’m going to have to deal with a multitude of insect bites no matter where in the world I’ve been lucky enough to have travelled to.

As for ticks, they had never really been something I’d focused on to be honest. Sure, I’d heard about them and in the past 10 years or so I have even pulled a few out of people’s skin but like the vast majority of people in the UK, my knowledge of Lyme disease was very little. I think my first real introduction to Lyme was hearing about how it nearly ended the career of Ray Mears, years ago.

Wherever we did come across ticks, the information made available to us regarding removal and treatment was also limited, if not non-existent. One firm I was working for as a bushcraft instructor offered no information at all about working in an area with a high prevalence of ticks. When I was presented with a twelve-year-old boy who had a tick in his eyelid after playing in the woods with his class mates, I was told to simply put a small dab of Vaseline on it. This is something we now know to be highly dangerous as it can cause the tick to purge itself into the puncture wound and increase the odds of infection.

Cut forward to November 2017 and I’m in North Wales working on my white water canoeing skills under the guidance of the legendary instructor, Ray Goodwin. I wasn’t feeling my best during the day and I think Ray and I just put it down to it having been a good few years since I’d been on moving water but by the time I finished for the day and headed back to my hotel, I felt rough. As the evening went on, I felt worse and worse; fevers, chills, nausea, you name it. I felt truly awful, had no sleep and had to pass on my apologies to Ray and cancel the rest of the course. I was too weak to head home immediately so I stayed another night at the hotel, having spent the whole day in bed, and then headed to my sister’s house in Telford the next day where I spent another night before slowly making my way home to Kent.

Nearly two weeks later, I still had bad flu-like symptoms with lots of aches and pains and my wife was advising me that maybe it was time to visit the GP. I’d had to cancel a few jobs here and there and was conversing with a colleague who oversees the site at Lee Valley where we also run a few courses. This was when the subject of Lyme was first raised. Considering the environment I work in and the collection of symptoms I was experiencing, it was something we couldn’t rule out so when I went to see my GP, he agreed to refer me for the necessary blood tests.

Now, a little knowledge can often be a dangerous thing. I had done some research online about Lyme disease and heard a variety of horror stories about testing issues and people with truly horrendous issues and symptoms, struggling to get adequate help and treatment from the NHS.

Now, let it be said upfront, I am a huge fan of the NHS and think it’s an amazing institution full of unsung, underpaid and overworked heroes so I was fully prepared to place myself in their hands. Another useful source of information was my father in law, who had been diagnosed with Lyme a few years back after a nasty bout of illness that saw him hospitalised. Thankfully, he was seen and treated very quickly with a course of IV antibiotics and, other than a few minor issues, hr has made a full recovery. So, I remained confident that, whatever the outcome of the blood tests, I’d be ok.

It took a couple of weeks or so for the blood tests to come back by which time I was no better. I had good and bad days but, overall, I felt rough and so it wasn’t a shock when the blood tests came back positive for Lyme. I’m not medically trained enough to be able to professionally interpret the test results, but I could see that out of the various IgG bands they tested, eight out of them came back positive. The GP also said that it indicated that it wasn’t a new infection and that it could well have been in my system for quite a while.

I wasn’t able to pinpoint when I was bitten as I don’t recall a bite and I hadn’t seen the traditional bull’s-eye rash that some get. A little research told me that many people don’t get the rash and are completely unaware of getting bitten by a tick. The big downside to this was the information telling me that an older infection was a lot harder to treat. Nevertheless, my GP followed the standard protocol at the time and prescribed me a short course of the antibiotic, doxycycline.

Heading into Christmas that year, my symptoms went up and down. I’d finished my two-week course of antibiotics and I was having good and bad days. I was noticing new aches and pains here and there. Courses and birthday parties from our woodland base camp in Kent and a busy weekend seemed to wipe me out for a day or so afterwards. In January, I went back to my GP as I really wasn’t feeling any better and in fact, probably worse than when I’d first approached him. As he had fulfilled his responsibility as far as treatment went at that time, he said he would refer me to the Neurology department of the local hospital who were better equipped to deal with ongoing issues associated with Lyme.

Well, the weeks and months went by and I hadn’t heard anything. My symptoms got worse and I started developing a few new, worrying ones including a noticeable stutter when speaking, especially when tired. I knew the words I needed to say but I just couldn’t get them out. This led to huge amounts of frustration. I was also getting what’s commonly known as “brain fog;” a feeling of being a little lost and out of it. The aches and pains were also getting worse, especially in my joints.

By this time, I had also contacted Lyme Disease UK, a wonderful group run by people who had gone through and who are still battling the same problems as me. It was great to speak to people who understood exactly how I felt and to receive their advice. As a brand ambassador for Craghoppers, the travel clothing specialist, I contacted them as well and they were keen to help spread the word about awareness of Lyme and prevention, utilising their Nosilife insect repellent clothing as well as liaising with LDUK to offer advice to the public.

I’d also arranged for a representative from Lyme Disease UK to come to The Bushcraft Show this year so that they could have a stand and help to inform people about Lyme as well as offer valuable information about prevention and treatment. I was there at the show too with my company Black Wolf Survival & Bushcraft and was keen to put some names to faces from the LDUK team. I finally met Julia Knight who is not only the organisation’s Press Manager but also a chronic Lyme sufferer. She has been ill for nearly 20 years, having been bitten in Thetford, Norfolk in 1999. I instantly took to Julia. She’s an amazing lady and I’m proud and honoured to call her a friend. She’s been a steady source of support and advice for a while now and always has the time to listen to whatever has been going on with my own problems.

That’s pretty much where my first article I wrote about my journey ended; with me experiencing a multitude of symptoms but remaining optimistic that a neurologist was on the case and would hopefully get to the bottom of my illness.

I finally got to see a neurologist at the end of May. I was saddened but not shocked to hear that I was his first Lyme patient. He seemed interested and keen to help as my stutters and pains had got worse. He ran a series of sensory and physical tests and said I should have an MRI on my brain and a second set of blood tests as it had been 6 months since my last ones. My wife and I left the meeting feeling optimistic that someone really wanted to help and that things would improve.

Sadly, I took a real turn for the worse, at the busiest time of my year. I was really struggling. A day’s work would wipe me out for a day. A weekend would take a few days to recover from and a busy week would take another week to get over. My joints hurt so much and sometimes I needed a walking stick to support me. A short dog walk could literally reduce me to tears. I developed a twitch in my right arm and my stutters and stammers got so bad that my wife ended up rushing me into A&E in July where they suspected I’d had a stroke. Thankfully it wasn’t a stroke but they took more bloods and ran a CT scan to verify.

A few days before I had been taken to hospital, I had been up at my woodlands and had been eaten alive by mosquitoes. Is it possible that with my weakened immune system from the Lyme and my body fighting the infection all these extra bites caused a major spike in my symptoms?

I had the MRI and a second set of bloods a couple of weeks later and waited patiently for the results. It wasn’t a shock at all to see that the second set of blood tests showed no real change in the Lyme. I was still very much positive. The MRI was relatively normal though. The neurologist was a little dismissive. He didn’t really know what to do with me next. We had brought information with us which we’d researched, including some letters from the doctor that treated my father in law a few years previously with a course of IV antibiotics.

I left that meeting highly frustrated. In fact, I got up and walked out as I felt angry and upset that nothing seemed to be happening and I knew that I was getting worse and worse. It’s horrific to feel your body failing and breaking down with pains that won’t go away. Losing my ability to talk properly was terrifying, especially as teaching is how I make my living. I went back to my GP in desperation but all he could really do was to call the neurologist’s office and chase them up to see what he proposed next. We were told we would get a letter by the end of the week. Two weeks later a letter arrived just saying I would be referred to a different department for more tests. I’m so grateful that during this time I had the support of my wife and her family, my colleagues at Black Wolf and Julia from LDUK. I must be honest and say I’m not too sure how I would have coped without them all.

So, we waited and waited and then on 19th November, out of the blue, my phone rang and a lady said she was from Kent & Canterbury Hospital and that a bed had become available on the neurology ward so they could admit me for more tests and treatment. I needed to pack a bag with some gear for a few days and get myself up to hospital immediately. I rang my wife to tell her the news and made my way up there. I was admitted to the ward that afternoon but I wasn’t really told a lot about what would be happening.

Nurses took some bloods and my blood pressure was regular but I didn’t see a doctor until the morning. They told me they wanted to do a lumbar puncture to see if the bacteria was in my central nervous system as I had various neurological symptoms. However, regardless of the outcome of the test, they would put me on a 28 day course of IV antibiotics, as I’d had two sets of positive blood tests for Lyme.

I wasn’t too keen on the idea of a lumbar puncture. Who is thrilled at the thought of having a large, long needle inserted into their back, through their spine? But, I agreed to it and it was truly horrendous. I had a nice junior doctor who tried a few times unsuccessfully to get the needle into the fluid sack before he admitted defeat and called in his boss, a senior registrar, who also took a few attempts at retrieving the sample. By this time, I’d had about nine attempts at a lumbar puncture which took almost two hours. It should have been a twenty-minute procedure. The pain and discomfort were bordering on unbearable but I managed not to scream or swear too much. The senior doctor told me afterwards that it was the hardest one she’d ever done. Aren’t I lucky?

It will take a few weeks for the test results to come back. In the meantime, I had even more blood tests and my first round of IV antibiotics was administered through a cannula fitted in my left arm. I had a very uncomfortable night after the lumbar puncture, struggling to even get out of the bed. The next day a specialist IV technician came and using an ultrasound machine inserted a long PICC line into a main vein in my right arm. The line runs through my vein in my upper arm and almost all the way to my heart. There is a tube attached to this with a cap so the IV antibiotics can be administered easily as the drips are attached to the tube.

The good news is that the hospital allowed me to go home and to be visited daily by a district nurse from the hospital at home team to administer the drugs. I would, however, have to knock work on the head for a while and be very careful with the line so as not to risk damaging it or getting it dirty. I had to sit tight for a month at home and rest.

I can’t tell you how pleased I was to get home. I’d only been in hospital for a few days but it was great to sleep in my own bed again and have my wife and my dog around. We had a children’s bushcraft birthday party booked for that weekend, so I’d arranged for my senior instructor Sean to take the lead on it and I would just assist as needed. I went to the hospital early that morning to get the antibiotics for the day which takes about half an hour and then went on to the woods. It probably wasn’t the best idea as I really felt awful afterwards, but I didn’t want to let anyone down and the kids and mums still said they had a great time. I had to explain that I wasn’t hungover as that’s how I looked, and they were all very understanding.

Since I’ve been home, I get a lot of headaches and as I said, I feel like I’m hungover all the time. There are a few aches and pains and a lot of this is to be expected when being subjected to two grams of strong antibiotics every day. I’m now taking it easy for the remainder of the month; resting and sleeping, drinking lots of water and catching up on paperwork. For a few days I was getting chest pains and my blood pressure was high, especially my diastolic readings which were hitting 116 when, ideally, they should only be 60-80. The Hospital at Home team booked me back into hospital again for the day where I had more tests including an echocardiogram and a chest X-ray. The doctor put me on tablets to help lower my blood pressure and they seem to be working well now.

Again, I’ve had amazing support and advice from Julia from Lyme Disease UK. I hope she won’t get embarrassed but she’s become like another mum to me over the last few months. My wife, family and friends are all being amazing and I’ve had such lovely messages of support through social media.

So, that’s my story for now and as for what happens next, time will tell. I don’t know yet what the spinal fluid tests will show or how well the month-long IV antibiotic course will work but, as ever, I try to remain hopeful and positive. I said online, to a good friend Ian who has also been treated for Lyme in the past, that hopefully this was the start of the end. His wonderful reply was that no, it was the start of a new beginning….

I can’t tell you just how important it is to be tick aware these days, especially for those of us who work in the woods and forests. However, we now know you can pick up a bite in a London park whilst jogging or on a cabin holiday in Norfolk so please be aware, take precautions and follow correct advice. We are still learning so much about Lyme disease and how best to test for it and, of course, treat it. There’s a lot of frustration and anger out there amongst some people suffering but all I can say is that every medical professional I’ve met has really wanted to help but bringing doctors up to speed takes time. There’s a lot of bad information out there about ticks, how to remove them and how to treat Lyme. Go to the Lyme Disease UK website for accurate and up to date information and join their Online Community.

Obviously, apart from getting better, my mission for next year is to help spread awareness of Lyme disease and to help advise people, especially those in the outdoor industry about risks and prevention strategies. For the bushcraft community, it turns out one of our great heroes, Otzi the Iceman, could well have been infected with Lyme as scientists found traces of Borrelia in a thigh bone. This means this horrible disease has been affecting us for over 5000 years.

I have only a few days left of my IV antibiotic infusion treatment to go. I hope it’s been effective and that my next update is a positive one. To all my fellow Lymies, keep fighting and stay positive.

Craig Fordham